17 Things People With Painsomnia Need You to Know

For people with conditions like fibromyalgia, the chronic pain doesn’t end when you lay down to go to sleep. In fact, the pain often makes it incredibly difficult to fall asleep at all, a phenomenon known as “painsomnia.” Like most forms of chronic pain, the effects of painsomnia are invisible, so when you struggle to go about your day after a sleepless night, those around likely don’t understand how exhausted you actually are.

We partnered with the National Fibromyalgia Association to ask our Facebook communities what they wish people knew if they see them after a night of painsomnia. What does the condition feel like, and what do you need most from friends, coworkers and family after a sleepless night? While people with painsomnia may not feel rested, they still make an effort to live their lives as healthy people do, and a little understanding and patience would go a long way.

Here’s what they said:

1. “Painsomnia for me is when I feel truly lonely, despite my partner lying next to me… The darkest hours are when I seek out the internet to distract me, to make me feel less alone. The next day I wish people believed I really didn’t get any sleep. I find some people think you are exaggerating or they have to try and compete with you. Just accept that when I say I’ve not slept I mean it.”

2. “Pain is a full-time job that is entirely draining. If I say I’m tired, please don’t say ‘me too.’ Or, if you happen to be particularly tired (because your life experience is valid, too), understand that our bodies are very different on the inside.”

3. “The night is lonely and quiet. You can’t escape the reality of your illness at 3 a.m. When the sun arises, we paint on our faces and show up for life hiding the secret that we battled physical pain and mental exhaustion for a good part of the night.”

4. “[After a night of painsomnia I’d like] a cup of coffee, a gentle hug, and someone to listen. After a while people get tired of listening to us talk about pain or our symptoms, and so we stop talking about it. So having someone take a minute to ask how we’re really feeling is a kind gesture.”

5. “You can spend 12 hours in bed and still be exhausted… Because the three hours you slept were broken and of poor quality.”

6. “When I go through these kinds of struggles, I really need you to understand I’m not always going to be fully functional like I normally am. I have chronic pain, and I need to be cut some slack. I’m not using this as a copout, I’m just making it aware so I can be understood.”

7. “I wish people could understand how strong I am. Not how weak I am… but how strong I am. Because even though I cry every morning or even during class, I’m still participating.”

8. “I wish people knew that when I show up late for work it’s because I spent the night in tremendous pain and watched the clock through tears because I knew I had to get up and show up to provide for my kids.”

9. “Stop saying ‘Go to bed earlier’ or ‘Try this, do that…’ and just accept my experience without questioning what I did wrong to have it!”

10. “When I’ve had a particularly rough night, I wish people would know I’m trying my best and could really use a kind word or hug.”

11. “Whatever you see on my face is the result of strength, not weakness. It’s not some failing on my part that I didn’t sleep, but rather I spent the whole night fighting with my own body, and I’m still going.”

12. “I wish people knew that being tired makes the pain so much worse, and it takes longer than you’d expect to recover.”

13. “I wish they would understand it’s not like a night of insomnia, and understand it wasn’t just another ‘sleepless night.’ What I need most after a painsomnia is to not expect me to be able to be my normal self. I will do my best, but please understand, I won’t be at my best.”

14. “I wish for daily help and care, just because I’m human and not because of my illness. Make me a cuppa or water the garden without question, cook for me or even just sit with me when I’m having a flare and keep me company. Having fibro can feel so lonely, and that feeling is the most painful of all.”

15. “I’m not mad at anyone, I’m not anti-social, I just can’t function like an ordinary person. Even though I look like I’m mad at the world, I’m only mad at this betrayal of my body.”

16. “After a night of painsomnia, I look and feel very fatigued. I am probably in a brain fog and need some time to just recoup. It may be doing a jigsaw puzzle on Facebook, reading a book, knitting a sock but, to me, this is a way to escape the lingering pain. I know the housework isn’t done, dinner hasn’t been planned, the laundry needs attention. Please just understand and let me work through this on my own schedule, at my own pace.”

17. “I wish someone would ask how they can help and then follow through. Sometimes simple understanding and empathy go a long way.”